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Tuesday, 29 April 2014

Four years ago three special little people were born, Reuben, Henry and Isla. I knew about their birth soon after it happened through the Bliss forums. Their mother was one of the first people I supported right through neonatal care and beyond.

We grew closer and closer as her babies continued their long and complicated journey through neonatal care.

I never met Isla but she captured my heart. Strong and stubborn, she weathered storm after clinical storm. Every day brought a new challenge that she overcome.

However as time went on it was just too much and Isla came to a time where she couldn't fight anymore.

Today on her birthday I wrote "Happy Birthday Isla" on a tulip and let it go down the Irwell.

She may be gone but she lives on forever in my heart and I will never forget.

Sunday, 27 April 2014

Easter Sunday was a glorious day in Herford, after some discussion my parents in law decided to take us to a barefoot park. We packed a picnic and headed off for an hour's drive, and arrived at a beautiful location.

Immediately Joseph wanted to explore the barefoot trail which runs along the side of this lake. Barefoot trails and parks are quite the thing in Germany, Austria and Switzerland. They provide a really fun sensory experience, a good work out, and leave your feet feeling very soft and rejuvenated, however, it must be remembered, no pain no gain!

Joseph boldly commenced along the trail, with me following behind. It became apparent that I am more brave than him and I did every part of the trail.

The worst part was also the best part, but it was hard to take pictures, it was a huge trench of mud, a really silky mud, a bit like cornflour mixed with cocoa, so not unpleasant, but thick and gooey and it felt very odd.

My husband, who due to his disability is spared such torturous activities, looked on giggling and said "it looks like your recreating the battle of the Somme".

At one stage we had to cross a flowing river and the stones felt like a million knives cutting into my feet.

The water was icecold which helped cut the circulation off so the pain wasn't so bad!

We thoroughly enjoyed the barefoot experience, and it was a really lovely family experience.

Germany may not be somewhere you have considered for a family holiday, but it really is a fantastic country for children and families, with no end of things to do, many, like this, are free.

Saturday, 26 April 2014

At the end of term we opened Joseph's bag to find a school project that filled me with dread and sadness, you can read the post here

Joseph has always known about his start more or less, he's seen pictures from early on. He went through a phase of denial being upset when he saw pictures of me holding him, thinking it was another baby.

Joseph can pretty confidently explain his pictures, but still, I felt the project was a difficult one. I was so surprised to hear his thought processes as he looked over all his baby pictures. Now the project is finished.

To be honest, I think this project has helped me more than it has helped Joseph. I have seen these photos a million times. He chose a home one with a bottle, which surprised me, and I actually hate that photo as I really wasn't keen on formula. It's a healing journey, seeing this pictures through Joseph's eyes, and also seeing myself in his eyes too. He wanted me in every picture. It's very healing to live with a little person who thinks you are the most amazing, most beautiful person in the universe.

I can't thank the nurses enough who ensured our first hug picture looked as non clinical as possible. It must have been a brave decision to give him time off CPAP at that stage, and they hid all the wires and cannulas, I remember them all coming out of the end of the blanket. But that picture looks so "normal" just small.

I'm glad its over and I hope that perhaps it helps bridge a few things for the teachers, so they understand just where my little superhero has come from.

Monday, 14 April 2014

Rather impossibly I've been around the neonatal world for almost 5 years now. I never really chose this journey, it chose me. And I am one of the around 10% of parents who I estimate, cannot walk away, and choose, in some way to remain involved.

Over the course of the 5 years I have seen a number of changes, on the whole, improvements, to neonatal care and specifically family centred care. I know Bliss are a massive factor in this and I am so proud of the Bliss Baby Charter.

The biggest change I have observed is in breast feeding. When Joseph was born I was encouraged from the outset to express. I think the nurses, from what I remember, were very gentle in encouraging this, however my midwife and one of the consultants (I think actually an SHO, were much stronger).

I had told my night midwife, who took care of me antenataly and postnataly for 3 nights, that I was determined to breastfeed. She ensured that I expressed within 3 hours of birth, the recommendation is six hours and this often isn't done for a number of reasons, I believe its usually because staff aren't sure how to broach it with the mum, who is often distressed and confused. I had taken control from the outset and knew that getting expressing established early was key.

When I went to see Joseph for the second time a lovely young (male) doctor said "what are you going to feed your baby?" I replied "my breast milk", he then beamed, grabbed a chair and gave me loads of advice. He advised me what to eat, how to think, how to cope with expressing. He told me I could go on to breastfeed. Then I didn't see him again.

As Joseph progressed I wanted to feed him myself. The unit didn't have much experience of tiny babies, and in our area there were low breastfeeding take up rates generally, let alone in special care. I couldn't get any quality advice. I tried phone La Leche Leage and NCT, but noone had any experience of tiny babies. I ended up locating the Trust breastfeeding advisor who came to see me. She looked at Joseph and shook her head. "You will never breastfeed that baby, he's too small".

And I believed her. She was the professional, I was just an inexperienced first time mum with a very different baby. My milk started to wane, and I lost all confidence in myself. My usual reaction when someone tells me never is to fight, but I had lost all my fight. I needed someone to fight for me, and for Joseph but there was no one.

How heartening now is it for me to walk around units and see that the general expectation is that mothers will breastfeed. There is increasingly more support and help. I believe there needs to be more, but compared to 5 years ago we are far ahead of where we were.

However, never forget, as a professional, as a fellow parent, as a friend or a partner the words you say are powerful. Use them wisely.

It was a quiet Sunday and Joseph and I decided on going to the "dinosaur museum" the Manchester Museum adjacent to the University of Manchester. However something happened. As we were on the tram towards St Peter's Square, Joseph spotted the Art Gallery. He decided he really wanted to go there. I was impressed as he had never been, doesn't frequent Manchester so must have read it. We had an enjoyable couple of hours wandering around. Then we left.

Manchester's very own instrument of terror

"Oh Mummy, look we can go on the big wheel!" exclaims Joseph.

"No Joseph we can't, we don't have enough money, we don't have enough time, we are not going on the big wheel", I quickly counter.

"Mummy, I know you are scared, but I'll look after you", he says, patting my hand reassuringly. And before we know it we are queued up to pay.

The attendant looks at Joseph critically "Are you sure he will be ok?", she says the concern clear in her voice.

Joseph sighs and rolls his eyes "I will be fine, mummy is frightened, but I've promised if she's a good, brave mummy I will get her an ice cream when we are down". Howls of laughter from the atendants, security guards and throngs also queued up for this terror ride.

An apprehensive and worried Joseph

Our booth turns up and we are shown inside. How I didn't throw up as we started moving I don't know. Joseph was so excited and began running around the booth. "Sit down!" I yelled. Joseph laughed at me "Sorry mummy, do you need me to hold your hand?" I barked "yes!".

Joseph admiring the view

I kept taking photos, to keep my mind off the motion sickness. I really don't do heights, especially moving heights, it just scares me and makes me feel sick.

View of Moseley Street

View over Manchester I think towards Piccadilly Station

I do love looking at the big wheel but have to say I appreciate it much more from terra firma.

For the record I was taken for a 99 with flake and strawberry sauce following the ordeal, for being a good, brave mummy!

I am glad I did it, but I don't feel the need to ever. do. that. again.

Sunday, 13 April 2014

It was afternoon, handover time at 1pm. We were told that that we were to have a cuddle with Joseph. I seem to think it was a Sunday, day 3 after his birth, but I could be wrong. I wish I'd dated the pics, but hey, my brain wasn't in that space to do so. I'm still in patient, as that's my pyjamas, and I'm still bruised from the anaesthetic.

F and B were the nurses in charge of Joseph for his first weeks. They were so amazingly calm and unflappable. They treated me as part of the team, with utter respect. They made sure I was fully informed. If something was going on they weren't happy with they would whisper in my ear and tell me how to challenge. I loved them and still do.

I gather they fought for this moment, and very calmly made sure NICU was quiet. F was in charge of taking Joseph out and placing him in my arms then we swapped so daddy could have a cuddle too. It was the most amazing moment of my life, this baby I had reluctantly delivered 3 months too soon was actually mine.

When the cuddle was over, it was about 15 minutes, we went to the family area and I just howled and howled. I couldn't believe that I finally had a hold of my baby. But also it hit me how bloody long this road was going to be. He was so small, so fragile. I couldn't envisage the future. So I just only ever concentrated on the next milestone. You can eat an elephant, I'd recite to myself, just one bite at a time. And that's how I viewed his journey, just focus on the immediacy and don't look too far ahead.

The next time I howled like that was week 9. There was a flurry of excitement on the Monday I came down to the ward. One of the nurses whispered "you have date! A date! Joseph is going home next week, but look surprised when the consultant tells you." I froze. I didn't feel excited. I felt terror. A whole week for something to go wrong.

Because in NICU you can never dare to hope too hard. Every day has trouble and challenges of its own. 7 days. A lot can happen in 7 days.

The consultant came on her round and told me, all things being well Joseph would be coming home on Tuesday 21st July having been born on the 8th May. I cried. And cried. She was shocked. I revealed how hard the last 9 weeks had been, how I'd struggled, how lonely I'd felt, and she was so shocked and surprised as I'd kept so positive. Now I'd wished I had made more of a fuss and asked for help.

The last week was utterly dreadful. Mostly it was ok, but he had to have his vaccinations (they'd forgotten at 8 weeks and did it at 10) and of course his CRP was raised. One of the doctors hadn't twigged he'd had his vaccinations decided he was ill, put him on his invasive monitoring again and threatened to delay discharge. Let's just say mummy lion when into full on protective eat the predator mode and the monitoring machine was quickly banished to the storage cupboard.

Then at the very last minute the opthalmologist due to do the last ROP check was late. Joseph was awaiting this before going home. Then he arrived and the opthalmologist nurse had left. He talked about returning in a few days to do the test. Mummy lion growled, I will hold the baby and you will do the test. So I did. And it was done, and home we went.

So long since that picture had been taken. But finally I got to take my baby home and have cuddles whenever we wanted.

Through Bliss I met a wonderful family Sarah, Mark and their little girl, a couple of years older than Joseph. Sarah was explaining that her daughter had been asked to take a birth picture in to school. They had a discussion about which picture to send. I often wondered how I would feel when the time came.

My husband pulled this out of Joseph's schoolbag last night:

"Please could you complete the attached worksheet with photographs of your child from birth to most recent. We will be looking at changes over the next half term and this would be really helpful for their learnig. Please insert the photgraphs inside the leaves and the middle of the flower."

At present my PTSD is flaring up, which it does every 12-18 months or so. Cue opening of the floodgates and tears flowing. My husband sees Joseph's beginning so differently to me, I guess because in a sense he's detached from it, he didn't fail Joseph, I did. For him Joseph was always his Action Man, too small, but growing every day. To me he was a tiny, fragile little human, forced to do so much on his own because my body failed him.

And here I am again. I thought I'd dealt with the guilt and feelings of failure, but nope, they are still there. Take off the band aid and the wound is still raw. I am annoyed I still feel like this. And I need to accept that on some level I will always feel like this.

Joseph and I have had a chat this morning and he chose the next picture as his birth picture. Joseph hates the idea he was in a plastic box all alone, and has chosen his first cuddle at 3 days old.

He was very insistet that everyone be able to see his face. Nothing illustrates change better than that picture really does it? You can see his size, but its a positive picture. He was insistent any picture include at least mummy.

Joseph's story is a positive one, and a powerful one. He is resilient, strong, funny and happy.

If these pictures amaze me, just how much will they amaze the kids and teachers in his class?